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Guest Room: Parenthood with a Down Syndrome twist

My previous post has me thinking about what it means to be a parent, who becomes parents (biologically, almost everyone) and how having Down Syndrome brings unique complications to all of that. As a parent of a child with Down Syndrome, I want my child to be independent and to follow his dreams. What if that leads to the path of parenthood? Now you may say that isn’t possible, but it has happened, so you never know what the future may bring. Just as what is seen in this short film in “Guest Room,” it is a very real possibility many of us may find ourselves in this situation (in some form or another) sometime in the future. (Click here to see the clip.)

Lauren Potter does an excellent job expressing the distress of someone just learning she is pregnant, of someone that is not trying to have a baby and who isn’t married. But it isn’t just the fact that both parents have Down Syndrome, there is also the additional complexity of the fact that their child has a 50% chance of having Down Syndrome. There is so much to consider in the mere 13 minutes of film because it raises so many questions in addition to the usual surprise of an unplanned pregnancy between two unmarried people: making us think about the possibility that people with Down Syndrome can conceive a child, the question of who is going to raise the child if they decide to keep it, how will they be able to raise the child on their own if they want to do it themselves as well as what kind of support is needed in that case, to what happens if the child also has Down Syndrome? And I’m sure there will be people out there questioning if a couple who both have Down Syndrome should even be allowed to keep their child, and more who would take an active role to take that child away from them if someone else wasn’t actively involved in the role of raising that child (although legally I’m not sure what is permissible or not, but I can imagine it being a controversial topic).

But the truth is, all of this is very much possible, especially as we encourage our children towards inclusion and independence. Because if we teach our children with Down Syndrome that they can be independent and are capable, if we provide opportunities for inclusion and expect them to be treated just like everyone else, then won’t that lead to marriage and the possibility that they too can also want a child or be in a position where they find that they are pregnant? If we teach them to fly, then is it fair to clip their wings when we want to and is convenient to us?

Now I’m not advocating that we just encourage all people with Down Syndrome to raise their own children, that isn’t my message at all. All I’m saying is that by teaching them they belong in an environment of inclusion, that they can be like everyone else and go to college and get married, does that not mean they can also be a parent? Like Megan’s mom had to deal with on Born this Way, we too may find ourselves having that difficult conversation. For myself personally, I find it difficult to be consistent with that message of inclusion and independence without having to also support what that means when it comes to the huge responsibility of parenthood. I mean how do you tell them that not only are you worried about who will take care of their child, but that you are concerned that their child could also have Down Syndrome? What kind of message would that be? That someone like them (meaning having Down Syndrome) is not something wanted in this world? For me, I don’t think I want to send that message to my child, as complicated as the consequences may be. And I personally don’t believe it either, although you may not agree.

But it is a huge responsibility – there is no doubt of that. But I also think many people don’t consider that when they find themselves in the position of being a parent, especially for the first time. A first time parent is an eye opening experience, and it is hard to be fully prepared for parenthood without experiencing it firsthand. And the situation leading up to that fateful moment is not always ideal. Because how many pregnancies are a result of a lapse in judgment? And just like anyone else, a person with Down Syndrome may have that lapse in judgment and result in a situation just like we see in “Guest Room.”

I recently watched a documentary about heroine addicts who find themselves parents, and how their addiction conflicted with their parental instincts of wanting to take care of their child. Sometimes it worked out; other times, it didn’t work out well, and the child ended up being raised by a grandparent(s) or supported by them. These stories were sad (and heroine addiction is a very serious problem in our country), but it was obvious that the heroine addicts were not prepared to become parents, and many were not able to fulfill that responsibility of raising their child. I didn’t see anyone chastise the addicts for being so irresponsible of bringing a child into the world under such harsh circumstances (babies are born addicted to opiates when the mother is exposed to heroine during pregnancy) and not being able to raise their child without help.

Now, I know this is not the same because these addicts have a chance to turn things around, get their life together and be able to raise their child successfully. But that is not guaranteed, and honestly, nothing in life is ever guaranteed. If we had to ensure that a person had to be fully qualified to be a parent, then many of us wouldn’t be here. I’m pretty sure I wouldn’t be. And then there is the difficult question of: what are the qualifications of being a good parent? Is it love, affection, financial and emotional security, being a good teacher, patience, understanding, all of the above and more? There is no such thing as a perfect parent, and many become parents without meeting this entire list (some may not meet any of them). So what right do we have to deny a person from being able to have a child of their own? Yes, I know it isn’t that simple and it wouldn’t be easy, but when is life ever simple and easy?

And what about the question about having a child that has a 50% chance of having Down Syndrome? Well, look at your own child and ask yourself if you would do it again, and if your child deserves a chance at life. It’s easier to do that in retrospect because you know how your child turned out and how much you love your child. But what about the unknowns? The fact is though, when it comes to having a child, there aren’t that many “knowns” to begin with. That is the beauty and complexity of raising a human being – they aren’t programmed to be a certain way that you dictate – having a child is all about embracing the unknowns the best you can and trying to make the best decisions for your child with what you do know. Then having to trust them when they are adults to make their own decisions. And to be honest, if having to deal with this problem is the biggest challenge I will ever face as a parent, then I would consider myself fairly lucky.

We can also talk parallels about teenage pregnancies and similar considerations, especially if we (as their parents) feel it best if we raise their child for them or if we feel we must take a very active role. In that case, do we have more of a say in what happens? Well, if we expect our children with Down Syndrome to grow up to be responsible adults with Down Syndrome than we would have to do what any parent would do in similar situations: hope we raised them well enough to make good decisions and be responsible enough to know how to follow through on those decisions. Because at the end of the day, we have to trust them and love them enough to support them no matter what their decision is and the resulting consequences.

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Author’s Note

All suggestions in this blog are based on my own research, advice I've received from others or my own experience. If I were ever to receive an item for review, I would disclose it. This blog's full purpose is to help others and is not set up for any kind of monetary gain. If you would like, please donate to your local or national down syndrome group. Good luck!

Disclaimer

I am not a therapist, doctor or lawyer. I'm just a stay at home mom who wants to help others. That said, please take the advice on this blog with a grain of salt. What works for one child may not work as well for another child. You should refer to your doctor, dentist or therapist for anything of a medical nature or anything specific regarding your own child.